November 2013
Newsletter

Dear Friends,

People of India, let us not fail our fellow human beings in pain.

The Indian Parliament meets for the third time this year, on the 5th of December 2013. The long-awaited amendment of the draconian Narcotic Drugs and Psychotropic Substances (NDPS) Act of India (Lord, what a mouthful!) has been waiting for action by the Parliament for almost exactly a year. We are trying hard to reach out to people who matter to make sure that we do not fail in our duty to our fellow-human beings in pain.

Let us hope for the best.

Pallium India is pleased to announce the appointment of its Chairman, Dr. M R Rajagopal, as Visiting Professor in Palliative Medicine. St. Johns Medical College is one of the premier in Medical teaching institutions in the country, always ranked among one of the top ten of the 350-odd Medical colleges in the country.

Dr. Rajagopal delivered the Golden Jubilee talk in St. Johns Medical College Bangalore on 8 November 2013. The title was “Dispelling Myths in Palliative Care”. While much of the discussion centred around myths surrounding the spectrum that Palliative care can cover and the obvious questions regarding opioids, a part of the discussion focussed on the issue of withdrawal or withholding of life support in the face of futility of treatment.

The audience’s reaction was considerable. Many members of the audience expressed their own concerns and fears regarding the needless and sometimes cruel prolongation of life at the cost of quality of life of the patient and family, in the face of futile treatment.

Dr. Vani Ramkumar, a Professor of Obstetrics and Gynaecology, summed the discussion up by saying that in all her life, one of the most worthwhile things that she did was to make sure that her colleague could take another look at her dying parent before starting of intensive care. Then she took the colleague for a drive round the campus.

Little things matter a lot. For that doctor’s parent, the intensive care gave little benefit, and may have induced some suffering. But that one last look of farewell and the companionship at the time of crisis, were therapeutic for the doctor.

Pallium India is privileged to be associated with St John’s Medical College and is grateful to Prof Tarey, Dr Shoba Nair and the erudite audience. We look forward to working with you.

Our close associate, Dr. Priyadarshini Kulkarni, who is the Medical Director of Cipla Palliative Care and Training Centre at Pune is the winner of this year’s annual award of Cancer Aid and Research Foundation.

Congratulations Dr. Priyadarshini Kulkarni

Pallium India is very proud to collaborate with the Palliative Care Department at Bhagwan Mahaveer Cancer Centre at Jaipur, Rajasthan. North India desperately needs more training centres. Why should doctors, nurses and others have to travel to South India for training?

The force behind the training centre is Dr Anjum Joad Khan. She combines passion, humor, resilience and tenacity of purpose to keep on working away at the barriers and eventually achieve her objectives. Her first 6 weeks’ course started on 25 November 2013. We are very grateful to Dr Odette Spruyt, from Melbourne, Australia, who initiated the Hamrahi program which works with Pallium India to support palliative care programs.
Pallium India-USA is offering to support the program. Thank you Dr Jerina Kapoor and colleagues.

Pallium India participated in the International Conference on Emergency Medicine held at Vythiri Village in Wynad in northern Kerala on 18 November 2013. We discussed three elements of possible inter-phase between emergency medicine and palliative medicine.

The first was in the area of Pain Management, which, sadly, is very much lacking in any aspect of medical practice in our country.

Second was the area of communication and the need for the emergency medicine team to keep the patient and the family informed and therefore to learn the art and science of it.

And thirdly, about the need to have education, guidelines and protocols for withholding or withdrawing life support in situations of futility of treatment.

Professor V. S. Mahadevan of Stanford University, USA, who had earlier delivered a plenary lecture, responded to this from the audience, by agreeing to the importance of the three elements. He particularly asked a question. Why is it that most hospitals do not have opioids? When he asks for pain medication in India, all that he gets are injections of Diclofenac or Tramadol.

This is a very vital question, Dr. Mahadevan. Of course, there are numerous regulatory barriers to opioid access, which we hope will be removed by the Indian Parliament in its Winter session in December 2013. But we are sure, it is not only a question of regulations. All the regulatory barriers that apply to morphine also apply to Fentanyl, a much more expensive opioid. Why is it that the more expensive Fentanyl is available in many hospitals in many formulations while morphine is not?

Those who participated in the discussion on the subject agreed that closer interaction between emergency medicine and palliative medicine is indeed necessary. Dr. P.P.Venugopalan and team (who organized this conference and facilitated this interaction), Pallium India thanks you. And we congratulate you for taking emergency medicine out into the community and saving many precious lives.

Pallium India was privileged to have Mr Willem Scholten visit us in Trivandrum. Mr Willem Scholten is currently a consultant to WHO. Formerly, he headed the Essential Medicines program of WHO.

Mr Willem Scholten accompanied our team on home visits and taught in our “Bruce Davis Training Centre” on several subjects including paediatric pain guidelines. One of the issues that came up was the new WHO guideline for paediatric pain management which excludes a step 2. If step 1 is inadequate, it is recommended that we proceed straight to oral morphine, albeit in tiny doses

This is based on sound reasoning. The step 2 opioid that was recommended for paediatric pain management was Codeine. Codeine is a pro-drug of morphine, meaning that it has to be converted to morphine in the body. A minority of patients are genetically unable to convert Codeine to morphine and in this group of patients, it would be ineffective. There is absolutely no possible objection to the use of morphine in tiny doses where you might have ordinarily considered a step 2 opioid.

There is a practical problem, though. The vast majority of countries in the developing world do not have access to morphine. Will the abolition of step 2 in children convey the wrong message that it is dangerous to use Codeine when morphine is unavailable? We would very much like to convey this strong advice that when morphine is unavailable, of course we must try hard to obtain it. But till we get it, it is perfectly acceptable to continue to use Codeine for paediatric pain management when step 1 alone is inadequate.

One of the most famous names among global leaders of pain management is Dr. Prithvi Raj in USA. In 1993, he founded the World Institute of Pain, which today is a major force in improving pain management globally.

The World Institute of Pain had its world symposium at Kolkata from 14th to 17th November 2013. One of the highlights of the meeting was the Serdar Erdine lecture by Mr. Diederik Lohman. Mr. Lohman presented the remarkable findings of the Pain Prevalence Study.

The Pain Prevalence Study, which was conducted very recently under the leadership of Mr. Diederik Lohman of Human Rights Watch in collaboration with Pallium India, MNJ Institute of Oncology and the Regional Cancer Centres at Cuttack, Ahmedabad and Kolkata, has just been completed. The findings are remarkable. While the final results are yet to be published, it will not come as a surprise to anyone that the pain burden in any Regional Cancer Centre in the country is tremendous. The audience listened, enthralled, and expressed its hope that Parliament does enact the amendment of the Narcotic Regulations of India.

Thank you, Dr. Prithvi Raj and colleagues, and thank you, Dr. Gautam Das, organizing secretary of the conference. Pallium India was privileged to be a part of it. And thank you Mr. Diederik Lohman and Human Rights Watch for all that you are doing for this country.

The chairman of Pallium India Dr. M.R.Rajagopal and volunteer Sunshine Mugrabi were privileged to visit the offices of Child Family Health International (CFHI) in San Francisco, an organization created by Dr. Evaleen Jones when she was a medical student. We spent time with the director Dr. Jessica Evert and the team. It was a good exercise to review the program in all its aspects. Currently, four palliative care professionals from CFHI are with us in Trivandrum, going through their one month attachment.

From one of the previous batches, two participants, Ms. Lindsay Brahm and Ms. Mary Macy Jacob (Alex) wrote narratives on their experience in Trivandrum which were published in an indexed journal – the Journal of Pain and Palliative Care Pharmacotherapy. In the picture you see Alex in our Pediatric Palliative Care clinic. Here are the abstracts, with the citation.

The author is one of four American premedical students traveled to India to spend a month with Pallium India (palliumindia.org) to learn about palliative care at Trivandrum Institute of Palliative Sciences, in the south Indian state of Kerala. The program was arranged by Child Family Health International (cfhi.org). They attended classroom sessions and joined the palliative care team during home visits and hospital consultations. They learned not just what palliative care is, but also how to understand and adapt to another culture. It was shocking to learn that all health care expenses are often out-of-pocket for most of the developing world and to see the extent of the suffering involved in life-limiting diseases. The students saw how the medical professional could adopt a basic and simple approach to medicine, acting as a mix of scientist, humanist, and spiritualist. She concludes that we in the United States too seem to be learning the value of such an approach and to make better use of available resources to improve the quality of life of those who are suffering.

Through the Eyes of Child: Reflections on My Mother’s Death From Cancer. Mary A. MacyJournal of Pain & Palliative Care Pharmacotherapy. 2013;27:176–178.

Before being exposed to palliative care, I had lived through 15 years of emotional suffering, beginning with my mother’s relapse of leukemia. My mother died 12 years ago; however, the suffering did not end there. Palliative care helped me find meaning and purpose in my suffering. During her illness I received no explanations about what was happening to my mother, and I felt utter emotional loneliness. I received no help in coping with the uncertainties of my mother’s life with cancer or of her dying process. The experience left me sad and angry.

Sheltering a child from truth does not lessen fear or alleviate pain; it only causes feelings of confusion, anger, embarrassment and shame.

PARTING SHOT

It is not too late to register for the 21st International Conference of Indian Association of Palliative Care. The event is from 14th to 16th February, 2014 at KIMS, Kusabhadra Campus, KIIT, Bhubaneswar. For more details and to register, please visit the official website: http://iapcon2014.in/

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.